Sunday, December 22, 2013

ASAN on Non-Verbal Autism

Just in time for the holidays, the Autistic Self Advocacy Network (ASAN) has put out a new video promoting its views of autism. The video is pretty much in line with most of what they have said in the past but there is one very prominent theme that I wanted to talk about.

So, first thing first, if you haven’t seen the video, go watch it here.

Did you notice how non-verbal autism was portrayed? If you missed it, here are a few lines from the video about what it means to be non-verbal -

People know what "nonverbal" means: I can't speak, so I use my computer to communicate.

Even though I couldn't talk, my parents believed that I could understand speech.

My parent's got me a computer so I could speak with them. Once I learned to type, I never stopped. Now I have conversations with my family every day.

The presumption in all of these statements is that, even though a person is non-verbal because of autism, their language ability is intact. That they can still understand language when someone uses it with them and will be able to demonstrate that ability if given the proper assistance.

Unfortunately that presumption is badly wrong and, quite frankly, very damaging. When a person is non-verbal because of autism it is because autism is disrupting their ability to receptively understand and expressively use language. This disruption is pervasive and will likely impact their ability to use language in any form.

What the video seems to be referring to is a form of verbal apraxia which is another disorder that is sometimes (but rarely) co-morbid in autism. In this disorder the person has problems speaking, i.e. verbally using language, because they have problems producing speech.

It can be difficult to tell the difference between apraxia and non-verbal autism because there can be so much overlap and only a specialist is going to be able to make a proper differential diagnosis. But there are few differences that you will typically see.

People with apraxia will typically have the ability to receptively understand language and the ability to expressively communicate using methods other than speech.

People with non-verbal autism don’t typically have a problem making the basic sounds of language or putting those sounds together to form words but rather are unable to use those tools to emit language.

But perhaps the most important difference is that the conditions need to be treated differently. I don’t know that much about treating apraxia but I do know that to teach a non-verbal person with autism to communicate you have to try and teach them how to use and understand language.

Over time you would expect, given the proper help, that people with either condition will improve and find ways to work around their disability. But if you are expecting a non-verbal person with autism to be able to suddenly one day type fluently with both hands and use perfect language to express complex philosophical ideas about why Autism Speaks doesn’t represent their views on autism, you are going to be disappointed.

It takes a long time and a lot of hard work to learn to use language and it doesn’t happen simply because someone reads to them and they see letters as colors.

I know from personal experience that my two mostly non-verbal twin daughters have made significant progress over the years. They can now understand simple ideas when someone talks to them, they can repeat most words, they can say simple sentences, they can write words, they can read aloud, and they can even type.

But what they can’t do yet is use language in any form to express more than the simplest thoughts, hold even a simple conversation, or use language to learn abstract ideas. The disruption in their ability to use and understand language is profound and is at the core of their autism.

The twins, along with their more verbal younger sister, fall into the part of the spectrum that involves severe language disruptions. This part of the spectrum makes up at least half of all cases of autism.

One of the things that I have learned over these past eight years is that the one thing you can’t do is sit back and expect that the person understands language or is going to regain the use of language on their own.

You can’t just “accept” the person is different and keep throwing incredibly complex language at them and hope they will learn. The available evidence suggests that doing so can hinder a child’s ability to learn to use language.

The good news, if there is anything good about language issues, is that there are quite a few good resources for how to approach the problem. For example, this book covers the basics of how to work on teaching communication and, if you want a a primer on what is known about the language disruption in autism, I would recommend this book.

But keep in mind that with even the best methods and using a variety of supports and accommodations that is it going to take a while to overcome the non-verbal aspect of autism.

4 comments:

I have a lot of issues with FC. A LOT. IMO FC is no different than "hand over hand" which is used to mimic and teach a skill. Until the person can do it independently, you cannot "assume" that the person understands. How can someone who has never learned to read or write magically write full sentences with proper punctuation. It's impossible. Yet, they claim those with autism can.

My youngest is non-verbal. From the testing, his playing and working with him it is obvious to everyone he understands everything that goes in, and can speak when he has something to say. NOT, you speak to him and he replies immediately. This is a completely different skill and it is NOT apraxia. The SLP made that very, very clear to me when we did speech testing in the fall which he bombed, yet the psychometric testing (non-verbal ones) in the fall said he was not ID. He's not.

He's been taught to read, write and spell and he does very well at these skills. He refuses to use a device to communicate. He is not "trapped", he is autistic and it's time these people learned what non-verbal autism is and to stop making assumptions that are very obvious they know nothing about.

Oh, should have added he is 12 now and we've been working to get this far since he was 18mths old... it takes a very, very, long time and this year he's made a slight shift in awareness. He's a smidge more verbal, he's a smidge more social. It's very hard to explain but I'm really excited about it.